There are stacks of guides and toolkits designed to help professionals engage with patients, service users, and wider communities affected by public projects and policies. But what is there written from the point of view of the participant? Not much, unless I'm looking in the wrong places.
I've been writing recently on the theme of "participation isn't working" - items here - and coming to the conclusion that change now is most likely to come from people starting old-style campaigns for improvement to services, and maybe using new-style digital technologies to help. For example, citizen journalism is entering the mainstream as Simon Waldman wrote recently, and in Teesside Steve Thompson is showing the way for some bottom-up e-democracy. mySociety is building terrific digital tools like Pledgebank and WriteToThem, and the BBC is doing its bit.
That meant I was particularly interested when an editor of learning materials called up to see I can could contribute a training and self-study module about how to represent other public service users on official committees, and to get fellow users, patients or carers involved in seeking improvements.
Before agreeing a brief, I did some Googling and found research by the National Association for Patient Participation which cites two pieces of work: Training and Facilitation Resources at the University of Birmingham, and the National Consumer Council's Strong Voice programme. The latter offers a substantial toolkit and induction programme to trainers for a £500 licence, and is based on years of development and testing. As a sample page shows (pdf here), it covers some key issues for participants, and suggests that representation is about:
a voice for others
obtaining information and passing it back
being involved in decision-making
access to the views of others (being represented)
developing a consensus (or not)
experience of users
effective advocacy – getting the message across accurately.
However, both of these resources, are written for trainers - not participant/users. I also found an excellent guide for professionals called "Asking the experts: A Guide to Involving People in Shaping Health and Social Care Services" (disclaimer, it does quote from a guide I wrote a few years back). It provides an extensive overview of the issues, and lots of guidance .... but again it is for professionals.
There are lots of courses and books on the separate issues involved - like being on committees, organising with others, communicating effectively, developing your confidence. But I couldn't find anything which brought those issues together with the challenges of finding your way through the bureaucracy, and deciding how far to go along with the type of participation on offer. I wonder why? Is it because there's an easier market in developing kits for trainers ... and the organisations that fund this sort of work may be disinclined to give too much help to citizens and service users who may challenge them on the services that they offer?
The nearest thing to a guide that I found was on the BBC Action Network: How you can get involved in improving NHS services in England, though it is by its nature fairly broad-brush, and concentrates on signposting.
I'm going to write around a few people who have taken a radical position on user empowerment in the past, and see if they know about something I missed, or might be interested in helping developing something new if there is a gap. Any ideas welcome - add a comment, or you can find me here. I've bookmarked my researches in a rather haphazard fashion - main tags are participation, and health.
My immediate conclusion is that the editor who approached me is right - a new guide is needed. However, a major challenge will be to create something that really works for the reader/user ... with navigation to suit different situations, skills, styles and roles. How to do that? Well, my suggestion would be to involve some users in the development of the guide, in workshops and also online. Otherwise there's a danger that in our enthusiasm to produce a guide for users we becomes just another example of 'experts know best'. Of course experts may know best, if they get the question or problem right ... but how can they do that if they don't ask the users in the first place? I'll suggest the task is to produce a guide with users.